For the love of inclusion?

I thoroughly enjoyed the coffee I had with a parent of an autistic child earlier on this week. I was far less enamoured, though, with the subject matter of our conversation. I say conversation – mostly it was the poor parent relating to me what the current circumstances were for her son who ‘attends’ a mainstream school. I deliberately put attends in inverted commas – I guess you’ll soon see why.

He (the autistic child in question) has a place at a mainstream primary school.

He is very bright and frequently demonstrates that his academic abilities are way higher than might be expected for his age.

He appears to be under massive amounts of stress and it takes a monumental effort to get him into school.

While at school his ‘behaviour’ is such that he is not allowed to be within the vicinity of other children.

He is frequently barricaded in a room.

He frequently injures himself such is his distress.

When he is unable to make the considerable effort to force himself into school he is classed as a ‘school refuser’.

The Local Authority tell his parents that they have a policy of inclusion, and that he should be attending the mainstream school.

This is not an isolated example; he is not the only child in the country having this experience. I’m not saying most autistic children experience anything like this – but no child should have to suffer like this.
The dictionary definition of inclusion is ‘the act of including’ or ‘the state of being included’. This child is not being included; quite the opposite – he is being segregated in possibly the most extreme manner imaginable. In fact, the very policy of ‘inclusion’ in this instance seems to be leading directly to exclusion. I thought that the days of assuming that inclusion meant ‘integration’ were long gone – sadly, not for this child.

At what point will Education Authorities understand that ‘mainstream’ schooling is not always the aspiration? That in fact, what we should be striving for is far less tangible and yet far more meaningful – first and foremost, the well-being of the child; the education must surely come second to that and if well-being is not being met then surely there must be an acceptance that the placement is not the correct one for that child? When I deliver training for Inset days I am so often told by teaching staff – ‘we simply can’t provide the support/strategies/environment that the autistic child requires’ – at which point I tend to think, ‘well, if that is case, why is the child still here?’ It seems to me that teachers are openly acknowledging that their school – for whatever reason – is not the appropriate environment for the child – so why is it that there is so much pressure on the child and the parents to do everything in their power to continue to go to that school – and, far more importantly, at what cost to the child’s well-being? However important education is, good mental health must surely be a priority. And make no mistake – traumatic experiences at school can certainly have a longer term impact on an individual’s mental health. We know, for example, that suicidal ideation and attempts are higher within the autism population – and levels of pathological anxiety are vastly higher within the school age population compared to non-autistic peers. If simply being at school is contributing to those levels of anxiety, then shouldn’t something be done about it?

The impact of a child being forced into an environment that is ostensibly ‘inclusive’ but in reality is anything but can be devastating. And if the alternative is to brand the child a ‘school refuser’ – this sends a very clear message. The message is that it’s somehow the child’s fault; they are the one to blame; they are the ones refusing the school.

So – what is the alternative? If we are going to accept that the autism spectrum includes a vast range of individuals with differing needs, we equally need to acknowledge that those needs may require differing teaching and learning opportunities. Alternative schooling need not be expensive, nor need it be exclusionary – as the National Autistic Society note, ‘some children will be able to have a more inclusive experience in a specialist setting‘. Specialist need not be synonymous with expensive.

The point being, inclusion should no longer be measured in relation to accessing a mainstream school. So when a child is clearly not in an appropriate setting, please don’t assume that inclusion in mainstream is the ‘gold standard’ – for some children, nothing could be further from the truth.

‘Real’ inclusion should be based on well-being, equality, happiness – these matter. Being shoe-horned into a mainstream environment under the auspices of ‘an inclusive society’ without taking those things into account – that isn’t what autistic children should ever have to face. Mainstream can be ideal for some; but traumatic for others.


As always, these are simply my thoughts only…

I am so frequently astonished at just how much ignorance there is in the autism world. I find myself questioning, over and over again – why, why, why? Surely – surely – it’s not that complicated? There isn’t that much that one can say that is irrefutable when it comes to ‘statements’ about autistic children and/or adults, but equally clearly (I think) it’s not too difficult to understand how much is so wrong in our current society, so I feel I have the ‘right to write’:

Why are autistic children told that their future will be bleak…when there is absolutely no way on earth that anyone has any clear idea of what the future holds? Shame on any professional who professes to have a crystal ball and pretends that they can see the future.

Why are autistic people branded as having no sense of humour…when the opposite is so clearly the case for so many people?

Why are autistic children deemed inferior simply because they find communicating verbally problematic…when in many cases if the rest of the world took the trouble to learn their ‘language’ then communication could be as effective as talking?

Why is anyone seeking to ‘prevent’ or ‘cure’ (eradicate?) an entire, rich, resourceful, enlightening population without whom who knows what state the world would be in?

Why is honesty seen as something that should be divided up and only given out in segments, while the rest of the time lying is somehow ok? We tell our children – over and over – tell the truth, honesty is a virtue – and when they speak their honest minds they are told “you’re being inappropriate”…”you’re rude”…”you’re too honest”…

Why are so many autistic adults denied an identification of their very self – a diagnosis of autism – when it can be such a meaningful and life-changing experience?

Why is glorious solitude forcibly disrupted for the child for whom others have decided that ‘peer relationships’ are somehow more important than low levels of anxiety?

Why is there an expectation and sense that ‘fitting in’ is a desired and positive state of being, while acceptance of difference remains a pipe dream for so many, leading to debilitating and crushing mental health problems that could be avoided?

Why are autistic children and adults told – “no, you can’t be autistic, there’s nothing wrong with you” – as if there was something inherently ‘wrong’ with being autistic?

Why is inclusion more about physical integration and school attendance rather than acceptance and flexibility to meet different needs?

Why are crucial employment opportunities denied to so many autistic adults as a result of the extreme disadvantage individuals are at because of typical traditional recruitment, job descriptions, and ways of managing employees?

Why are parents sent on generic parenting programs as a means to reducing difficulties their autistic children are facing?

Why is there such a lack of understanding that many problems faced by autistic people are not because of their being autistic, but because of others’ lack of understanding?

Why do research funders habitually ignore or not engage with the autistic population when identifying what research needs to be undertaken?

Why are parents forced to spend considerable time and effort in fighting for their children’s rights when all they want to do is spend time supporting their children?

Why are there so few roles that demand high levels of autism understanding when it is clearly so important to the autism community?

Why are children sometimes forced to behave in ways that are actually painful to them – physically, mentally, and/or emotionally – just so they behave in ways that are common to their non-autistic peers?

Why is there an ongoing drive towards ‘autism awareness’ – as opposed to genuine understanding?

Why are there so few autistic individuals involved in all the strategies, training, policy development, legislation, and academic awards that relate to autism?

Why is the constant message to autistic individuals and their parents still so often rooted in disabling negative terms such as impairment and disorder?

I don’t think I am a particularly bright person. I think these questions are pretty simple. So – why – why! – are they still needing to be posed?